There are lots of reasons why people with disabilities decide to get more help. Some don't have a choice - because of the extent of their disabilities, because of their family situations, or because of other health issues. Some don't have time to do all of their personal care, homemaking, and other tasks themselves. And some just plain don't want to do these things themselves! However, regardless of the reason for getting help, most people prefer to have the entire caregiving and care receiving process be as short and un-disruptive as possible.
One good way to minimize disruption and to keep caregivers from becoming the focus of your life is to get organized. You need to figure out just how much help you need. Doing this is a two step process. First, you'll want to consolidate tasks so you'll need as little help as possible. Remember: assistants and helpers get paid by the hour. Then, you'll want to actually "do the math" and figure out just how much help you really need.
Decide which end of your day - morning or evening - is most important to you. When do you need to be on time? When does your performance matter most? If you work outside the home, chances are your mornings are pretty important. If you don't go to a specific job or if you don't need to be up and going early, it could be that the evening, when you're spending time with family or friends, is your most important time of day.
Regardless of how much assistance you're going to be needing, keep this important end of your day as free of tedious time consuming chores as possible. If the morning is your important time, move showers, bowel programs, leg bag cleaning, and so on, to the evening. Then, when you get up, just do the basics - dressing, washing, teeth brushing, etc. Save the big, hard things for later.
On the other hand, if you want to be able to spend an uninterrupted evening with your family and kids, if you like to "surf the net" into the wee hours, or if you're a party-animal, keep your evenings uncluttered and move all those time-consuming routine tasks to the morning. Then, when you're ready to hit the hay, you can do it in five or ten minutes, after just brushing your teeth, pulling off your clothes, and sliding into bed.
Regardless of which end of the day is most important to you, the goal is this: during that time, do everything you can to minimize the number of things you have to do, and the amount of time it takes to do them.
Now, it's time to focus on the help you need at the opposite end of the day. It might seem like everything has gotten moved to this time period, but keep in mind: you've got 7 days in a week, 30 in a month!
You need to calculate just how many hours of help you'll need per week. Below is a check list that people with spinal cord injuries have used to help them calculate their needs.
There are hundreds of ways to consolidate, and some people have been able to group tasks to such an extent that they can eliminate either their morning or their evening assistant. For example, Dave, who has quadriplegia, made these simple changes to his routine:
When evening rolled around and Dave didn't want to have to go to bed on someone else's schedule, he was able to do the bare minimum for himself and get himself into bed and safely "tucked-in" for the night.
Does this mean that everyone who re-organizes and consolidates enough will be independent and safe on their own? No, but just about everyone can make his or her care less complicated, less disruptive, less costly, and less time consuming. And, that's a lot!
Like all of our brochures, this is part of a library of educational brochures developed by Craig Hospital with a federal grant titled, "Marketing Health Promotion, Wellness, and Risk Information for Spinal Cord Injury Survivors in the Community." The opinions expressed here are not necessarily those of the funding agency, the National Institute on Disability and Rehabilitation Research of the US Department of Education.
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